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pandagirl
11-05-2009, 05:29 PM
I just started Plaquenil...4 rheumy's gave me same Rx..I was very hesitant because along with the Lupus I have developed crazy drug sensitivities...I am on a very low dose to start...I have heard such mixed opinions...I guess it's wait and see:unsure:

Angel Oliver
11-06-2009, 04:46 AM
Hi Pandagirl,

How are you? Not seen you for a while.I too have meds sensitivity like you.Also i started Plaquenil about 8 weeks ago on the low dose of 200mg.So far i can tell no difference,but i know it does take quite a while to get into your system.I too worried id react badly to it,but thankfully been ok.Let me know how you go with it.

Lots of love xxxxxxxx

Bonita
11-06-2009, 04:38 PM
i have been on plaquinel for over a year now and have a lot of drug alliergies and it has not bothered me so far. I was just started on methotrexate over a month ago and was scared to take this one but so far okay. Isn't it fun having these dieases. Hope you do well Bonita

pandagirl
11-07-2009, 11:59 AM
Thank you ladies...yes Angel I was busy for a while and hadn't been on much. My computer is in my basement and sometimes I am just lazy... and now it is getting chilly here in Jersey..basement has very little heat.Cold = ouch. I started on 50mg..now 100 mg..so far just slight upset stomach on and off. As long as no rash I am happy.. I get hives from EVERYTHING! Several years back I developed 'food allergies'..I kept saying "it's like my immune system is going haywire"..but they only were treating the symptoms ..not the cause. I am sure it was the Lupie beginning...to weird, so many positive skin tests...even to things I CAN eat.

mountaindreamer
11-08-2009, 03:07 PM
hi andrea, i hope you are having a nice weekend. I started on the max dosage of plaquenil at 400 mg per day. I suffered with upset stomach issues for awhile, but they subsided. After 5 months (the time it takes for plaquenil to do "the best that it is going to do"), my rheumy added methotrexate. I was scared to death of both of these drugs, but the fears are worth it, because i get several days each week where i feel pretty good. Once on the meds, your dr. will keep a close watch on all of your bloodwork. I have found that all of my drs. continuously check me to make sure that no organ damage is being done..........Let us all pray for better treatment options.

pandagirl
11-08-2009, 06:38 PM
Thanks Phyllis...encouraging..I go back to the rheumy the beginning of Dec. He said he would do blood work of his own because I brought other blood work to him. He didn't want to stick me again at that time. I hope it gives me some relief from my "oddities"..it's not always pain..rashes/nerve impulses/fatigue/sleep disturbance. I am stressing right now too because my 23 yr old daughter is exhibiting a lot of symptoms and I am pretty sure she has it too. She goes in Jan to my rheumy(like getting in to see the pres.!)I am super worried because I also have an 11 yr old and if it is our female genes??? To watch 2 of them suffer would put me over the edge. One is bad enough. I am trying to be positve for her but it's tough..they say the younger you are the worse it is.

mountaindreamer
11-08-2009, 07:25 PM
i know what you are saying pandagirl. I strongly suspect that my son suffers with an AI disease. He has similar symptoms, but his tests all come back normal. Knowing what i do, i realize that this means that they just can't make a diagnosis, it does not mean that he does not have an illness. Oh, it is worse waiting when it involves your children.

pandagirl
11-10-2009, 05:52 PM
Phyllis...sorry to hear you possibly shared something as well..lol..wow, how old is your son? How long has he shown symptoms? It is so much less prevalent in males.

magistramarla
11-10-2009, 07:21 PM
Hey Pandagirl,
Hang in there with the plaq. I think that the combo of plaq, MTX and mega-doses of vitamin D is really helping me. Other than my "down" day after my injection, I'm feeling pretty darn good the rest of the week. Now if the docs could ever do anything about my painful knees and hips, I'd actually be back to normal!
Girl, you DO NOT look old enough to have a 23 yr. old! Unfortunately, I think that I have also passed along AI issues to my kids. I'm very sure that my mother and aunt both suffered from them, but they were never properly diagnosed. My daughter Kayla (25) has had asthma and GERD since she was in her early teens. She was recently diagnosed with IBS.
My daughter Hillary (30) has poly-cystic ovarian syndrome and has been told that she might be pre-diabetic. She and Steve are trying so hard for a second child with no luck.
The oldest girl, Heather (32) just recently told me that her knees are aching and "giving out". Those were my first symptoms when I was in my 30s.
Meg (23) had asthma during puberty, but seems fine now - I hope she stays that way.
My son Tom (27) is the only one who hasn't had complaints, but then would any Marine complain about pain? They seem to seek it out!
I'm convinced that it is something in our genes - the scientists just haven't figured it out yet. Hopefully, they'll have much better treatments by the time our kids reach our age.
Hugs,
Marla

mountaindreamer
11-11-2009, 11:59 AM
hi pandagirl, my son is 30, and has been suffering with a lot of pain for the past few years. He also deals with sleep apnea, anxiety disorder, and fatigue. His tests continue to show everything is normal, but i won't be surprised if he is diagnosed at some point. and i agree with marla, you don't look old enough to have a 23 year old child....

debbie-b
11-11-2009, 04:07 PM
Thank you ladies...yes Angel I was busy for a while and hadn't been on much. My computer is in my basement and sometimes I am just lazy... and now it is getting chilly here in Jersey..basement has very little heat.Cold = ouch. I started on 50mg..now 100 mg..so far just slight upset stomach on and off. As long as no rash I am happy.. I get hives from EVERYTHING! Several years back I developed 'food allergies'..I kept saying "it's like my immune system is going haywire"..but they only were treating the symptoms ..not the cause. I am sure it was the Lupie beginning...to weird, so many positive skin tests...even to things I CAN eat.

Hey lady,
The first thing you have to do, is get your Computer from the basement into your livingroom.
My new rheumy put me on plaquanil today, he told me to start with one pill 200 mg a day for one week and then go to two pills a day 400 mg.
I hope it is working for you. I am starting mine on monday, after my bloodtest.

Debbie

pandagirl
11-11-2009, 06:28 PM
Bless you ladies for the compliments...when my hair is straight like in this pic I do look younger than "normal"..I have really curly bushy hair, 1980's Jersey hair!!lolol..My kids tease me alll the time. I am sorry to hear your children are symptomatic as well. My 23 yr old has had weird "stuff" over the years. Tendinitis/fatigue/asthma/sleep disorder/(sleep eats!)/rashes...ect.. The most serious being an attack of pancreatitis that no one to this day has figured out. I feel so bad when she is really fatigued and achy and is trying to go to school and work. My little one..11yrs has Seavers disease(name for Tom Seaver..big name, small prob) tendinitis of the heels..is it the beginning for her as well???ughhh.I hate to say.. I'm glad I am not alone.I have such guilt.

MLockwood
11-11-2009, 08:06 PM
Hi Andrea,
I started the same medication about 8 weeks ago or so. I have started to see some improvment in my energy level and some days my level of pain. It did affect my stomach a bit thought. I am still waiting on only my 2nd set of labs from my Rhuemy, so I am pretty new to all of this even the pain. My symptoms only started about 5 months ago (feels like years ago =)) but I guess I am luck my GP recognized the symptoms. Keep in touch, I am interested to see if the meds work. It seems like I learn more about this disease from others than I do from my doc. Probably normal!>!

Lupie hugs!!:cute:

pandagirl
11-12-2009, 11:20 AM
Debbie..I am doing something even better about the computer..I am buying myself a laptop!!! I work hard ,suffer a lot..have had a tough year..my mom passed away a few months ago..I have a new attitude..I AM WORTH IT!! Can't wait to get it.
Mlockwood....So far so good on the Plaq..I am taking 100mg a day and slight stomach issue not bad at all. You are so lucky your MD was on the ball.Mine was too..I have been symtomatic for several years but never had positive blood work til now.
p.s. I work with an M.Lockwood..lol Margaret Lockwood and she has a sister-in-law with the same name!!
Hope everyone is having a good week. The weather is not so good here, but I am not getting my usual muscle aches..maybe the Plaq is helping???

pandagirl
11-24-2009, 03:12 PM
So..I have been on Plaq aprox 4 weeks..I have noticed that my hair is not coming out the way it was.... clumps in the drain!! It was scary..it definitely has slowed down. No other super change, although, I am not in a lot of pain right now, but I can not tell if it's the med or a quiet period for me? Either way..I'll take it!

mountaindreamer
11-24-2009, 05:25 PM
hi andrea,

so glad to hear that the hair is staying put. it is so frightening when it comes out in lumps. But, it does grow back.

Glad to hear that you have less pain. Did your dr. keep you on 100mg, or have you increased the dosage?

pandagirl
11-24-2009, 06:58 PM
I am taking the 200mgs as originally prescribed...I started out very low dose due to my drug allergies. I am exhausted today..lots of running around,just made baked ziti for my daughters class , baked two pumkin pies for Thursday. Have to work a full day tomorrow because my boss has no mercy, and have to bake apple pies tomorrow night! At least I feel up to it so I won't complain.Stick a fork in me though..I am pooped out. :wacko: